It takes hundreds, and often thousands of people
to design a clinical trial and carry it through to
completion. On the medical team, this includes
researchers, clinicians, nurses, technicians, study
coordinators, office staff and many more. In the
broader community, clinical trial teams reach
out not only to people with Parkinson’s, but also
to care partners and families, support groups,
primary care physicians and other local health
care providers. At the center of it all are the
study participants.
This manual takes the participant journey as an
organizing principle for optimizing clinical trial
design. From recruitment through post-trial
follow-up, participants volunteer to travel on a
highway leading to better lives for people with
Parkinson’s disease. Along the way, they interact
with both health care personnel and people in their
community to help them stay the course. On-ramp
encounters lead to engagement and enrollment. But
participants may encounter off-ramps — situations
that lead to dropping out — as well.
By understanding participants’ needs and the
obstacles they face in their journey, and by taking
into account the insights of a wide range of
stakeholders, clinical trial designers can streamline
participant enrollment and ensure that volunteers
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continue through to the trial’s end. Here, we
provide a step-by-step, patient-centered approach
to recruiting and retaining trial participants. Our
guide takes advantage of new technologies that
have increased patient awareness and enthusiasm
for clinical trial participation, made data collection
easier and opened new routes to novel discoveries.
In addition, we have assembled a toolkit that
anyone designing a clinical trial can customize and
use to present to the Parkinson’s community. The
task of recruiting and retaining study participants
need not be overwhelming. These practical
resources can help support progress in Parkinson’s
research.
Accelerating Clinical Trials: Best Practices for Recruitment and Retention